Bucketsofluke

This is Peter. I have never met Peter nor do I have any ties to him or to Duke University (other than the obvious KU basketball rival). I received an email with this video and photo yesterday through my sister in law and the Colorado Be The Match Account Manager she has been working with…

This last week was tough. Not tough like in-patient 24/7 lockdown tough, but tough because Luke had appointment after appointment, more tests than you can imagine, and had to sign more paperwork and consents than if he were signing off on traveling to Mars. More on our “work-up” week at a later time. But last…

My brother (Matt), my Mom (GG), and a couple of xanax picked me up at 10 am this morning to take me to Children’s Hospital for several appointments for my stem cell donor “workup.” Thankfully, I got in a quick workout beforehand with my favorite workout HAGS where we all continue to show up, bitch…

Our warrior Luke is coming home today! Since the last time I posted an update, much has happened. It has been a whirlwind as we navigated Lukes head to toe mucositis and other side effects. He spiked a fever one evening and we knew it was his marrow, counts, starting to kick in. Yet still,…

Luke has continued to do GREAT this last week. Eating a TON, building things- more gigantic legos and he also built a watch. We were hopeful the watch would take him several days to keep him busy, but it took him about 2 hours, if that. It is a very cool watch though! It gets…

Yesterday was a good day for Luke. I accidentally first wrote “yesterday was a God day for Luke.” That is definitely more like it. God gave him some reprieve. Although the chemo is still flowing, Luke sat up from noon until about 10 PM yesterday! Even walked to the bathroom twice. He also ate 2…

Bear with me. I’m feeling spicy this morning. I can manage tired. I think I’ve been tired for 19 years- since I gave birth. I’m trying to manage watching that sweet boy I gave birth to, go through hell. Again. And I am missing my other sweet boy, Mason, so much. This continues to be…

As I’m starting to write this, the team just brought Luke’s 5th round of chemo in since we got here on Thursday. I asked them to leave and take the chemo with them. They know what I mean. I saw Luke look up and see the extra gown protection the nurses wear when they are…

We have gotten a series of results today…all popping up in charts within 30 minutes of each other. First- Lukes’s cerebrospinal fluid has NO malignant cells in it. This is the result of the Lumbar Puncture (they extract some for testing as well as inject chemo straight into it). Luke has never had malignant cells…

Everything seems to have some sort of twist to it. An unexpected, short or long, big or small, kind of glitch. Luke’s bone marrow biopsy and lumbar puncture were on time last Friday. Check-in, wait, go to the triage room, vitals, blood tests, wait. Meet with triage nurse, ONC fellow, procedure nurse, anesthesiologist, surgeon, ONC…